As A Kid, I Fought Hard As Hell to Beat Cancer. Now I'm Helping Children Do the Same.

Jennifer Herweyer, who suffered from cancer as a child, is expecting a baby with her husband, Josh.

KYLE BULTMAN PHOTOGRAPHY

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When Jennifer Herweyer was 8, she was diagnosed with Ewing's Sarcoma, a rare bone cancer that affected the tibia bone in her right shin. Now 28, she works as a nurse at C.S. Mott Children’s Hospital at University of Michigan Medical Center in Ann Arbor, where she underwent chemotherapy roughly 20 years ago. Although her course of treatment can sometimes cause late effects that impact fertility, Jennifer is pregnant and expecting her first child with husband Josh in March.

Here, Jennifer shares her story to raise awareness about the need for dedicated research on pediatric cancers, which received just 5.6 percent of the National Cancer Institute's overall budget in 2016, according to the most recent budget data available.

When I was 7 years old, I'd lie awake at night crying from leg pain: Although I'd broken my right shin several times while playing soccer — I was an active kid — and my doctors said it had healed, I still felt like a screwdriver was going into my bone. My parents had taken me to the emergency room for this three times. Ultimately, I was diagnosed with a bone infection and sent home with an IV in my left arm. A nurse would come to my house to administer antibiotics every day for three months, during which I limped around.

For a while, I thought I beat it. But the pain returned several months later, in May 1998. When doctors biopsied my leg, they diagnosed me with Ewing's Sarcoma, a type of bone cancer that appears to occur randomly and spreads throughout the body quickly.

At 8 years old, I knew what cancer was and that you could die from it — my grandpa had passed from the disease two years earlier. Even though I was diagnosed late in the game, two years after my first symptoms surfaced, I didn’t think I'd die from it since my parents told me not to worry.

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When we went to the closest hospital that treated pediatric cancer patients — Mott Children’s Hospital, where I now work — we found out the disease hadn't spread beyond the tibia bone in my right leg. I still began chemotherapy that night, and for several days or weeks at a time over the next 18 months, I was in and out of the hospital, which was an hour and 20 minutes from my house. My mom would stay with me overnight, while my dad, who had to work, and brothers, who were 9 1/2, 11, and 12 years old at the time, would visit on weekends.

Two weeks after I began chemo, while on a break at home, I ran my hand through my hair and surfaced with a fist full of strands. I was so young that it didn't upset me, but when I showed my mom and grandma, they started crying. That day, they took me to a barber shop where I got my hair, which had reached my mid back, cut up to my neck. Even though my hair continued to fall out, I didn't want to shave my head.

Herweyer underwent chemotherapy treatment for a year and a half, requiring days- and weeks-long stints in hospitals.

Courtesy of Jennifer Herweyer

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Because it can take several rounds of chemo to effectively control side effects like nausea and vomiting, I felt awful for the first few months of treatment. Some of the medicines I took to help made me tired, so I'd sleep all the time, while others me made me very hungry and puffy. Once the worst of it was over, my parents wouldn't let me sit around and mope in my hospital bed. I'd do arts and crafts, play games, and have water-gun fights with other patients. I'd do school work if I was feeling up to it.

Three months in, doctors at the University of Michigan recommended amputating my right leg above the knee to get rid of the infected bone. After I met an amputee at the hospital, I cried to my parents, "Don't let them cut my leg off!" In response to my fears, they took me to the Mayo Clinic in Minnesota, a 12-hour drive from our house, for a second opinion.

There, surgeons suggested replacing my infected tibia in my right leg with the healthy fibula bone in my left leg. The night before my surgery in September 1998, I was so worried I'd wake up during the procedure that I barely slept. When they wheeled me into the operating room, the last thing I remember is my mom wearing scrubs and a surgical mask, holding my hand until the anesthesia kicked in.

After my surgery, I lost the remainder of my hair, opting to wear a burgundy Tweety Bird baseball hat rather than a scratchy wig. The experience didn't faze me until people began to mistake me for a boy, at which point I got my ears pierced.

As my treatments continued, we'd see other patients in my unit who'd had their legs amputated begin to heal and walk on prosthetics. Meanwhile, my right leg remained in its cast, which stretched between my ankle and the top of my thigh; my bones wouldn't heal until I finished chemotherapy. Throughout my treatment, my parents worried we'd made the wrong decision.

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Herweyer says her parents were concerned they chose the wrong treatment option when her leg did not heal as quickly as everyone had hoped.

Courtesy of Jennifer Herweyer

Because chemo compromises your immune system, I was especially prone to infections during the frequent road trips I took to Minnesota for follow-up exams and cast changes between my chemotherapy sessions. I'd often run a fever, be admitted to the hospital, and have to get a blood transfusion until my white blood-cell counts went up enough to fight back. It happened about 20 times; there's no normal — but this felt like a lot.My mom estimates I spent about 240 nights in the hospital throughout my treatment. When I was home, I preferred to sleep on a couch in my parents' room instead of alone in my bed, since I got spooked when I tried to sleep alone.

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It wasn't until I finished chemo in 2000, at 9 1/2 years old, that my right leg really began to heal. I used a walker, then a leg brace, crutches, and a cane. I was in physical therapy for several years to relearn how to walk without support.

Although I was cancer-free, my journey wasn't over: In the years that followed, I needed 20 more surgical adjustments on my leg as it grew. I also experienced several side effects from chemo, like difficulty learning, which occurs for unknown reasons, that led to me repeating fifth grade. The medication also affected my memory, so a large chunk of my childhood is blurry. Years later, at age 21, I'd be diagnosed with decreased heart functioning due to the kind of cardio-toxic chemotherapy I received due to my specific illness, and put on medication to treat the heart conditionthat causes birth defects if taken during pregnancy.

It wasn't until middle school, when I'd been in remission for five years, that I realized the extent of what I'd been through. At night when I was alone, I'd let myself worry about my cancer coming back.

At night when I was alone, I'd let myself worry about my cancer coming back.

To cope with trouble sleeping, I'd talk to my pastor, who'd share bible verses that made me feel better, and meet with a counselor to talk through the anxiety, which lasted until I got to high school. Without my church community and faith, which gave me enormous comfort when I was scared, it would have been incredibly difficult to get through this.

By high school,I began to feel especially drawn to kids with cancer. I volunteered at summer camps for children suffering from the disease. Although I briefly considered teaching as a career path, I ultimately applied to Lake Superior State University in Michigan to study nursing — it was my calling.

A year after college graduation, a position opened in Mott's pediatric cancer unit — the same one that treated me. Wanting to work with children, I applied and got the job.

Although the actual building where I stayed as a kid has been relocated to a new facility, driving to work at the new hospital still felt surreal. As a kid, I'd gone there so many times, solely concerned about myself, but it felt so much better to go with the intention of helping others. The first week, I saw flashbacks to how I felt as a child in treatment. There was a lot of pain, a lot of nights spent crying, and a lot of things I couldn't do, like go sledding in the winter, because I was in a cast.

It's been three years since I started, and although it's my dream job, it's still hard to work with kids who are sick every day. The toughest part, for me, has been getting close with the families of patients who don't make it. Seeing the parents fight cancer alongside their children has given me a greater appreciation for what my family went though with me. I've called my mom and dad a couple times after work, saying, "I can't believe you guys went through this."

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Herweyer had to relearn how to walk without crutches.

Courtesy of Jennifer Herweyer

Although I feel very blessed and lucky to have made it, I know I don't have to tell every patient about my experience to give them hope or make them feel better. I work with so many amazing nurses who've never had cancer who still make an incredible difference daily.

A year after I got married, a new cardiologist told me it would be safe, after all, to get off my meds and try to get pregnant. When I saw my pregnancy test turn positive, I screamed.

Herweyer is expecting a baby in March.

Courtesy of Jennifer Herweyer

Since I have early heart failure, I've been on sick leave from work since November to avoid overtaxing the organ as I wait for my baby to arrive — but have had a relatively smooth pregnancy otherwise. When I go into labor, I plan to check into the hospital yet again.

At the end of the day, it's my job, not necessarily my illness, that's given me perspective: I'm very aware than anyone can die at any time, which makes it's hard to complain about everyday things in my personal life. Although there are days when I'll sit around watching Netflix all day — I'm not perfect — I'm constantly inspired to live my life better.

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